An overview of the stages seen in lewy body dementia

There is no doubt each stage of Lewy Body Dementia (LBD) brings great difficulty to the individual having the condition, but also for carers and their family members close to them. This article is a direct message and guidance for both those affected by a loved one’s struggles and the individuals facing them. Each stage will be further unpicked and explained to help you gain a greater understanding of this complex and life-changing condition.

The seven stages of LBD are:¹

1. No cognitive change
2. Mild cognitive change (these will be difficult to notice)
3. Noticeable cognitive change (often shows as memory loss)
4. Early signs of dementia (this is commonly the stage of diagnosis)
5. Moderate to severe signs of dementia
6. Severe dementia (this usually lasts around 2-3 years)
7. Final stage of dementia (includes very severe dementia symptoms)

You are in the right place if you are looking for some support and knowledge to better grasp what LDB is and why this condition is so challenging. Even if this takes the smallest amount of pressure and burden away from you, it is important for you to feel heard. By being proactive, you are successfully finding ways to manage and cope with LBD, either for yourself as a carer or for the loved one suffering.

Understanding lewy body dementia (LBD)

LBD is one of the most common forms of dementia and is a progressive disease that develops because of protein deposits in the brain known as Lewy bodies. This causes chemical changes in the brain, resulting in problems in a person’s ability to think and move, as well as dramatic changes in behaviour or mood.²

LBD is not fully understood and has many similar symptoms as other forms of dementia. This can lead to misdiagnosis, often with Alzheimer’s. As this disease is progressive, misdiagnosis can be greatly damaging in slowing the progression of LBD since progressive can be very rapid, and so the correct management is critical. A key difference between LBD and other forms of dementia like Alzheimer’s is that memory loss often comes later down the line, and the first symptoms will often relate to the patient’s ability to problem solve, move and behave.³

How does lewy body dementia progress over time?

Stage 1 - No cognitive decline

The very first stage of LBD will go unnoticed by even the closest of those to the patient as well as the medical professionals potentially involved. This is because there is no concern for the loved one at this stage as they will appear normal.

Stage 2 - Very mild cognitive decline

This is still a very early stage of LBD but there may be progression of some more noticeable changes related to forgetfulness and the ability to concentrate. Due to this being very minor, it is often unnoticed and described as ‘normal ageing’. 

Stage 3 - Mild cognitive decline

This is the point in which the early stages of LBD are most likely diagnosed. This stage is challenging for both the patient and their loved ones. The patient will often experience frustrating changes to what was a previously normal routine. Key characteristics include:⁴

• Forgetting recent events
• Difficulty in concentrating on complex tasks, including problem-solving and multitasking
• Challenging aspects related to planning and organising
• More situations where the patient becomes lost or disoriented in familiar surroundings
• Sleep disturbance
• Increased anxiety and depression
• A minor risk of Hallucinations

This marks a point of LBD progression where you are understandably becoming more aware of the similarities to Alzheimer’s, as memory loss will be noticed by this point. The common way to tell the difference is that at this stage, LBD will primarily affect the physical aspects such as problem solving and concentration, whereas Alzheimer’s will have a focus on memory loss alone. It may be critical to mention that hallucinations are more common with LBD compared to Alzheimer's.³

Stage 4 - Moderate cognitive decline

Stage 4 represents the beginning of mid-phase LBD, where the same symptoms from early stages are present but begin to worsen and have a greater impact on quality of life for everyone involved. The severity of being unable to carry out tasks will begin such as the loved ones' ability to cook, clean, and even manage their own finances. Other symptoms will often involve a mild increase in memory loss, especially over recent events, more significant mood swings, and Parkinsonian symptoms.

Stage 4 is really a moment where immense empathy and understanding are needed about the fact that the loved one will become noticeably different regarding who they are as a person. Diagnosis often discovers LBD at this stage due to the onset of the particular symptoms described. 

Stage 5 - Moderately severe cognitive decline

At this stage, all the symptoms previously mentioned may begin to worsen. Your loved one may demonstrate a significantly shorter attention span compared to pre-diagnosis, and this will likely result in more significant timeframes of confusion compared to previous stages of LBD. It may be recognised that the loved one’s inability to recall core memories has become increasingly more apparent, which will undoubtedly bring difficulty to those surrounding the patient. Unfortunately, increasing the severity of symptoms will create an outcome where care for the patient is essential for their safety. Care is not an easy process for either side of the disease, and there are helplines available for you to gain some valuable and necessary support on this greatly challenging journey.

Stage 6 - Severe cognitive decline

Whilst the discussed symptoms continue to deteriorate for your loved one, there are going to be changes that confront you, which will alter both yours and the patient's day-to-day as you may know it. Most aspects of daily life will require assistance. Arguably, the most testing of symptoms will be your ability to cope with your loved one no longer recognising you and other close members of the family or friends. It is also expected that muscle stiffness will cause difficulty for your loved one and they might require assistance for mobility.⁵

Often, the loved one may make you feel that they are improving, with some days being better than others, however, this is unfortunately common with LBD and can be noticed in these later stages.

Stage 7 - Very severe cognitive decline

Other than the progression of the discussed symptoms, end of life with LBD will most likely mean your loved one will become bedridden. Research has also shown that abnormal breathing rhythm can occur in the final stage of LBD. At this stage, severe dementia symptoms will show, which include the following:

• More frequent infections such as pneumonia
• Complications towards eating and drinking: struggle swallowing
• Increased duration of sleeping
• Inability to speak

During the final stages of LBD, it will be critical for you to acknowledge the signs of your loved one's final days. This will not only allow you to spend time with them but will also allow you to provide them with the utmost comfort and support that they need. These signs include ⁽¹⁴⁾:

• Rapid deterioration
• Cold hands and feet
• Loss of consciousness
• Irregular breathing – rattly breathing is often a sign
• Complete inability to swallow

At this final stage, you may look back at the long and taxing journey LBD has brought you on. Reiterating that this is far from an easy journey may give you some peace in accepting the fate of your loved one suffering with LBD. It is okay to feel like you can accept their approaching passing. Accepting grief is difficult but will likely bring a sense of ease to the end of this journey and might just relieve the heavy pressures that have built up over the past years due to LBD.

Concluding the journey of LBD

LBD progresses over seven stages, where Lewy body proteins accumulate in the brain and cause gradually compromising symptoms relating to behaviour, memory and mobility.

Dealing with Lewy Body Dementia (LBD) is an emotionally and physically exhausting experience for both patients and caregivers. As the disease progresses, caregivers often feel an intense mix of emotions—growing more attached to their loved one while simultaneously experiencing deep grief and helplessness. The unpredictability of symptoms, from cognitive decline to movement difficulties and hallucinations, adds to the frustration and emotional toll. The journey with LBD is not just about managing medical challenges but also coping with the emotional rollercoaster it brings. Despite the difficulties, moments of connection and understanding remain, serving as a reminder of the profound love and dedication involved in caregiving.

No stage of Lewy Body Dementia (LBD) is easy, and managing its progression requires immense patience, empathy, and resilience. Caregivers face not only the practical challenges of providing care but also the deep emotional toll of witnessing their loved one’s decline. This highlights the crucial need for strong support systems to help them navigate the overwhelming journey ahead. LBD is a heartbreaking condition, and accepting its progression can be incredibly difficult for both patients and those around them. However, with the right support, understanding, and compassion, caregivers can find strength in their role and provide the best possible care while cherishing the moments of connection that remain.